‘It felt like finding hope only to lose it again’: A grounded theory study of rare cancer policies in Bulgaria

Abstract

Rare cancers, defined by an annual incidence of fewer than 6 per 100,000 cases, pose significant challenges due to their complexity, lack of expertise, and limited treatment options. In Bulgaria, these challenges are compounded by limited resources, fragmented care, and outdated policies. This study investigates policy stakeholder perspectives to identify gaps and propose policy alternatives for rare cancer care in Bulgaria, with implications for the broader European Union (EU) context. A grounded theory qualitative research design was employed to explore stakeholder insights. Eight key stakeholders, including policymakers, healthcare providers, patient advocates, and pharmaceutical representatives, participated in semi-structured interviews. Data was analyzed through thematic coding to map policy gaps and develop viable alternatives. Stakeholders highlighted significant gaps in funding, access to innovative therapies, and care organization. Four policy approaches emerged: Liberal, advocating for inclusivity and decentralized care; Conservative, emphasizing cost control and centralization; Balanced, integrating elements of both; and Status Quo, retaining the current system. While centered on Bulgaria, these findings address universal challenges in rare cancer care, offering a framework adaptable to other EU countries. Adopting tailored policies can reduce disparities, improve patient outcomes, and align national strategies with EU objectives, particularly under Europe’s Beating Cancer Plan and the EU Cancer Mission.